10/03/2013 11:00 am ET Updated Dec 03, 2013

Slowing Down to Splash in the Rain

Suzanne Perryman

It is bedtime, and my daughter Zoe, fresh from her bath, is heading to the kitchen table for her nightly medicine and dessert. She is tired, I can tell, by the slow way her legs come together, causing a clumsy and uneven gait. Step by step, she makes her way, pulling her walker behind her. She moves forward to the promise of cookies and milk, humming her way down the hall.

Maybe it it is the break in the hot Arizona weather, the cool breeze, or the beauty of our backyard desert sky, but something is calling to me. So, I go to Zoe and take her by the hand, carefully leaning in to her as my body adds balance and prevents her from falling. She is shaky and tired and she takes tiny steps now, in tandem with mine as I lead her. "Uhh, Mom? " she says, questioning the departure from our reliable nightly routine. "Dessert on the patio tonight," I answer.

I grab her covered cup of milk and small bowl of cookies with my other hand and we make our way out the back door and to our bench on the patio. We sit facing the natural desert and just watch. Above the shrubs the quail visit, the baby birds circling and tip-toeing down the line of a nearby fence. The sky is a darkened, shadowed canvas with fading streaks of color left behind from the setting sun. I look up at my tiny, twinkling white lights hanging above us. I strung them here recently, determined to take a moment in simple celebration each night, a reminder, to sit and breathe deeply, to just be.

Zoe's bowl of cookies rest in my lap while she drinks her milk and she leans against me. I am thankful that I remembered to steal this moment that is not so ordinary -- with the breeze, the beauty of the night sky and the unexpected relief from the recent 100-degree heat. Zoe is chattering contentedly, as she talks of school, her classmates, her big sister... but I have lost my place in the steady stream of her words. I am thinking again about the beauty of this moment and how lucky we are that Zoe can see this fading painted sky, even the small birds that slow their flight near the edge of our yard. Zoe has not lost her ability to see these things as the doctors once predicted she would.

Six years have passed since that diagnosis. Six years of Zoe learning and reading braille and six years of functional vision. Her retina diagnosis is still present, yet hasn't worsened and instead, her vision has stabilized. In agreement, my own view has stayed constant and committed; See and celebrate the simple things each day.

The other day, I found myself within earshot of a Mom with a young child. Near a field of grass, the child took off running. The Mom tagged behind, on the sidewalk along the field and after a moment, yelled to the child, "Stop running. Stop. Running," She yelled again, and then, I wanted to yell too. To this Mom... I wanted to yell ... let him run.

Let him run for my little girl, who never has. Let him run, and smile, and run faster and then fall and roll in the soft green mounds, until he is covered with grass, and sweat and laughter, because there are little girls like mine who will never run, who will never know what that feels like.

This perspective, this point of view, is a gift that mothers like me live with. We mother each day with our eyes wide open, not just marking the fatigue and the fevers and the falls that happen without warning -- not just for these things, no. Our wide, open eyes also savor the sweetness in a smile and the simple joy that comes with laughter, that simple actions and movement can take great effort,and therefore are a gift.

Like any other mom, I rush sometimes too. It was raining last week when I arrived at Zoe's school, and as I helped her out of her wheelchair she placed one foot squarely in the closest puddle, and followed with the other splashing in the rainwater. As I continued to lift her into the car, very softly she exclaimed "that was fun...," and instead of reaching for her seat belt as I had planned, in reverse I helped her back out of the car, until we stood facing each other, our feet planted in the same puddle, and with my hands on her shoulders steadying her balance, I told my girl to splash. Splash, as long as you want. Get as wet as you want, and as I watched her eyes shine and her smile spread, I was soon smiling and splashing too.

This patience, this perspective, even my point of view didn't come naturally. It has grown with time, with each new diagnosis, with setbacks and with each new achievement. This place I am in can't even be taught, or even learned through observation, as I once believed.

Yesterday on our way to school, I chatted casually with Zoe's big sister Olivia as we sat in the car waiting at the neighborhood light. There is a school bus stop at that corner, and the car in front of us was lingering, holding up the cars behind. "Ughhh," Olivia complained grumpily. "Why can't the kid just jump out and go already." Slowly, the passenger car door opened and a teen emerged, as he warily eased out of the car, finally standing we could see he was wearing over-sized glasses and carrying a long, white tipped cane. Olivia looked at me, slumping in her seat, as the harsh, powerful meaning of her words sunk in.

I watched Olivia in that moment, her eyes closed as she murmured an apology to herself. I thought about the life Olivia lives as Zoe's big sister. How she helps to care for Zoe, often getting her a cup of milk or a snack, helping Zoe walk across her bedroom or how she often brings Zoe her favorite toy or her iPad.

This big sister, who every day sees muscle weakness, physical challenges, impaired vision and who lives it too... and for a moment in her rush to hurry, hurry, hurry, forgot that sometimes things are not as they seem.

I reached for Olivia's hand, saying softly, "It has taken me over 10 years, 10 years of mothering Zoe, to open my eyes and understand there is more to every person than what we can see, to learn to slow down and be patient."

Together, Olivia and I watched the teen slowly step up onto the last curb and walk over to a group of teens. I looked at Olivia and she looked at me, and I know we were both thinking about Zoe. She saw her sister, in that teen, in that moment. She thought about how her own words, just spoken, betrayed what she thought she already understood.

And like that young child running fast on the grass, I thought of Zoe, and how I stopped rushing that afternoon in the rain, how my hands steadied her shoulders and the way Zoe stood, unsteadily, splashing, up and down in the puddles and how in the end, we were wet and muddy. And I am grateful that we took the time... because she could.

And I thought of those other mothers that would give anything, to help their child out of their wheelchair, for just a moment to splash in the rain.

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